Rename Diabetes?

“A rose by any other name would smell as sweet,” says Juliet to Romeo in the famous play, suggesting that names are insignificant and that we should pay attention only to the person or thing behind them. In the real world, of course, names can matter a great deal — just ask any politician who has supported the “estate tax” or opposed the “death tax,” to name just one example. When it comes to describing medical conditions like diabetes, there might not be quite as much controversy as in politics. But a recently started online petition shows that many people are unhappy with the names Type 1 and Type 2 diabetes, believing them to be confusing and not descriptive enough.

The petition at change.org, started by two mothers of sons with Type 1 diabetes, asserts that media coverage of diabetes often fails to differentiate between the two most common forms of the disease (less common forms include gestational diabetes, MODY, and LADA). These mothers write that especially due to the alarming incidence of Type 2 diabetes in children, but also in adults, Type 2 diabetes has almost completely pushed Type 1 diabetes out of general public awareness. This, they write, results in many adults taking Type 1 diabetes in children less seriously, not realizing that it can quickly lead to life-threatening situations (most notably hypoglycemia as a result of injected or infused insulin). They note that historically, the terms “juvenile diabetes” and “adult-onset diabetes” made confusion less likely, since even people with no education on the topic realized they were completely separate conditions. Only after “juvenile diabetes” started to appear more and more often during adulthood, and “adult-onset diabetes” appeared in children, did the terms “Type 1” and “Type 2” gain widespread use.

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The petition goes on to claim that both people with Type 1 diabetes and those with Type 2 could benefit from a name change that provides more of a description of each condition. Right now, it claims, many people attempt to keep track of the two conditions by thinking of Type 2 as “earned” diabetes, brought on by poor lifestyle choices, and Type 1 as “bad luck” diabetes. In reality, of course, there is a clear genetic component to Type 2 diabetes, and the petition claims that a descriptive term such as “insulin-resistant diabetes” would help discourage the public from blaming the victims by focusing on the biological nature underlying the problem. Similarly, it claims, a term like “autoimmune beta cell apoptosis diabetes” could help the public understand what is happening in Type 1 diabetes.

As of this writing, the petition has been signed by nearly 2,000 people worldwide, short of its goal of 8,000 but not hopelessly so, given that it has been online for less than two weeks. The petition has the support of several doctors, including Dr. Camillo Ricordi of the Diabetes Research Institute (which supports mostly Type 1-focused diabetes research). The petition is addressed to leaders of the American Diabetes Association, the National Institutes of Health, and the International Diabetes Federation.

What do you think — are the names “Type 1” and “Type 2” confusing or not specific enough? Do the names imply, as some people have asserted, that one type is more severe than the other? Do you think safety concerns about how adults might react to children with Type 1 diabetes — if they mistake it for Type 2 — are legitimate, or probably exaggerated? Have you had to explain your type of diabetes to confused friends, coworkers, or relatives? Do you think new names would be even more confusing? Leave a comment below!

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Fred A

I don’t see the importance of creating new names for Diabetes. When I was diagnosed the term was “you are a Diabetic”. / ! / ? ” . It is within the last few years that the addition of Type 1 and Type 2 has become a common question as to what “Type” you are. I think it is a required part of the name since there is actually a major distinction between the 2 Types as far as medication, diet, treatment and complications between the two plus the additional lesser spoken about the other different Diabetes conditions.

Maybe we should call it T1 or T2 but this will not resolve the confusion issues that occur.

Dr david sassoon

I have been working in this field for forty years and YES the names must be changed.
Patients and public in general DO NOT UNDERSTAND at all the difference.
Thanks
Dr david sassoon

David Spero RN

I wrote a blog about this back in 2010. We had about 20 comments, but we couldn’t seem to come up with better names. “Insulin resistant” and “insulin deficient” don’t cover it, because so often it’s a combination of both.

brenda

yes i think the name should be changed.i am a diabetic and can not tell the difference between type 1 and type 2 all i know is that i take a pill and my brother takes a needle

rocky

Who cares? I don’t need a smaller pigeon hole to fit into. I was diagnosed in 2007 and began immediately taking insulin and metformin. Through diet and exercise I got off all drugs. Has my Type changed over the years? I don’t know and frankly, it doesn’t change my approach to handling my disease. The definitions I read today for typing diabetes are different than they were in my grandmother’s day. I choose to not worry {stress producer} about which label I have, or am called, and concentrate on being positively motivated to be responsible for my health and well being.

Roger Beathard

I have been a Type 1 Diabetic since 1952. At first I was a “Juvenal Diabetic,” and now I am a Type 1. A name change is not necessary. Most diabetics know the difference between Type 1 and 2.

Both Type 1 and Type 2 Diabetes are complicated conditions. Thus a name change will not help others understand that both conditions require discipline and work from each diabetic and also research from Universities and drug companies. Continued
Type 1 and Type 2 research is necessary and we must work to help others we talk with to understand. A name change by itself will not bring an understanding by the general public.

Kathy

I do think that a name change is mostly a good idea. Most people know little about diabetes, much less the differences between the two types.

The only disadvantage in this separation is in the statistics. In order to get this disease cured, we need money for research. We are stronger and more likely to get legislation to help us if we stand together. Whatever discoveries that come through that will help a Type 1, will also help a type 2. Lets work together and make this a moot point.

Ferne

Not necessary to change the names. That would confuse more people than are confused about 1 & 2. Those few who are confused now need to get educated and it’s not that difficult to figure it out if you listen to your doctor. Don’t change!!
If the doctor who says that patients don’t understand the difference, he needs to explain it so they do understand so maybe part of it is a medical personnel problem. I am an RN and I have listened to many doctors who don’t get through to their patients because they can’t explain it well enough.

joan

I agree that to worry about a name of any type of diabetes is distributive to us individually. !

SO work with what type of diabetes we have; listen, learn, keep an open mind to help our individual system is the the only action I have taken as a Type 1 for 56 years.

The media and general public most often does not fully understand regardless of what name given to a type of diabetes or any other chronic disease or illness! They “sell” an article by using alarming headlines to get the public’s attention!

Fondie

Frankly I find people who aren’t affected by diabetes don’t care much about learning about it. I was diagnosed Type 2 and people always remarked..you aren’t fat you must eat a lot of sugar. I believe Type 2 definitely carries the stigma that are to blame because they brought it on themselves by not eating/exercising properly. And my favorite is people always giving me articles that claim “type 2 diabetes can be reversed” assuming I’m not trying hard enough. I was recently diagnosed as LADA…which really confuses people. I wish there was more info out there re: MODY/LADA as some people, even professionals have never heard or don’t know much about it. When my dr. diagnosed me with LADA she said I should feel better because now I know it’s not my fault. Fault? People seem to be a little more sympathetic towards me now but they still don’t ask about it. I really don’t think people realize how devasting diabetes is be it Type 1 or 2. You take a pill or insulin to fix it right?

Jeanette Collier

Because of the magnitude of media coverage of Type 2, combined with the omission of type clarification, Type 2 has inadvertently taken over the name Diabetes, leaving Type 1 without an identity to advocate for a cure. The general public doesn’t process a number – the number classification of Diabetes is failing. Are we not worth a name? The media exposure is a great platform to raise awareness for Type 2 and I do hope they can stomp the stigma & get the media to get T2 facts straight (not all T2’s can be cured). A name change is about clarity, identity, and ending the animosity between the groups which is unproductive and, frankly, sad. Confusion is negative, it leads to conflict and stands in the way of progress. I say, “Clarity is always a good thing”.

MJ Blaze

YES YES YES – there should be different names for the these different types of diabetes. My son was diagnosed with Type I Diabetes at 2 years old (some 28 yrs ago) – and there was confusion then about the differing types of diabetes, as well as the differing treatments. I know other Type 2 diabetics who don’t understand the differences – and while there are some disease commonalities, there are more of the differences that would support different names.

Michelle Berman

I surely hope the above comments were made AFTER reading the full petition. As it covers so much more. When I found out about this petition, I showed it to my 12 year old son who was diagnosed at the age of 7. Afterall, why not ask the children and adults living with Type 1 and Type 2 how they feel about it? My son said, the name doesnt really bother me either way, but it would be nice if it made more sense in the actual name. Like breast cancer, or heart disease etc. And if changing a name HELPS to bring more awareness and education what could be so bad about it? I would like to add that I agree with the above statement that people dont realize how devastating type 1 or type 2 is. But NO… my son cannot take a pill for his disease and the insulin he injects into his body after every single meal and before bedtime as well as the insulin injections for correction of high blood sugars will never “fix it” as the misconception and confusion between the two numbers (1 and 2) continues. The insulin he injects 5 to 8 times a day literally is saving his life and allowing him to live life every day. I respect anyone who does not support this much needed petition. But I dont see any harm in a name change. And its surely a step in the right direction to bring more awareness and education. Everyone says educate, educate educate… well lets begin somewhere to educate… first with name changes and who knows what will follow??? Rather than continue on with so many misconceptions and so much confusion. Even in these comments. Yes we are all in this together, I agree. So we should consider supporting positive efforts and advocates for both Type 1 and Type 2…which is uniquely found in this petition. Lastly, if you are on the fence, click on the petition and read the comments firsthand from all of the petitioners (type 1, type 2, doctors, nurses, family members, friends) as to the reason why a name change is important to them. It is moving to say the least.

Jen

From what I have seen and read, those who do not feel a change is needed are Type 2. As a mother of a T1D, I am often given advice on how I can ‘reverse’ my child’s diabetes by changing her diet, or making her exercise more. I also get well-meaning comments like, “Wow, I didn’t think she ate that much junk food” or “she isn’t overweight, is she?”. Those who live with T1D are judged unfairly, while constantly defending the nature of the disease. Of course Type 2s don’t feel as strongly about the names, their disease is not nearly as life threatening or serious as Type 1. Yes, genetics play a part in both. Yes, Type 2 can be brought on by poor lifestyle choices. Yes, there is NOTHING anyone can do to prevent or reverse Type 1. 90% of diabetics are Type 2, and the need to differentiate the 2 is necessary to allow Type 1 diabetics to live without having to educate ALL THE TIME. It is already a 24/7 disease without having to defend its origination. Personally, I think the name Diabetes should be removed completely from the Type 1 cases. Society has gone too far to simply add a new tag line to it.

Paulette Cothron

Both are confusing for people. But, what would we call Type 1. Go back to Juvenile Diabetes?

Dolores Dunlap

I think a name distinction could only be a GOOD thing to help distinguish between the two diseases. It is very confusing to MOST people…even to the ones who are afflicted by it (which is very obvious from some of the previous posts here!. My husband and daughter both have Type 1 diabetes and I have been dealing with this disease for over 25 years. The differences in treatment AND everyday medications are vastly different between the two. Even medical personel (especially local emergency volunteers and some EMT’s) have become confused as to how to treat patients not realizing how important it is to verify WHICH type of diabetes the patient has. This confusion could (and HAS in my own experience!) possibly lead to life threatening decisions. I have seen these circcumstances arise several times, and I think a name distinction between the 2 diseaes would minimize the margin for error in treatment, especially in emercency situations. A name clarification is a small change that can have a very positive impact!

Corey

Confusion between the two is frustrating for those of us who understand the difference. But for my six year old type 1 the confusion is heartbreaking! The look on his face when I have to tell him no there is no cure is gut wrenching!

Carol S.

I was diagnosed with juvenile diabetes in April of 1952. Back then there wasn’t such a definition as type 1 or type 2. No one ever heard of type 2 in children then either. When it is mentioned that I have diabetes, it bothers me that so many just assume that there is only type 2, and I just need to exercise more or eat the right foods. I wish there was a way to name diabetes that would be more definitive.

Jeanette Collier

Please go to http://www.change.org & search ‘name change type 1 2’ and it will pull up the petition to sign if you’re interested .

Jamie Perez

Thank you, Quinn Phillips for featuring our petition. The 1,000’s of comments left on our petition are an emotional testament to how much this cause means to so many. We appreciate every opportunity to discuss our petition. Anyone wishing to read it can click in the word “petition” at the beginning of the second paragraph above. Thanks for your consideration.

Sheryl

I agree wholeheartedly with Jen & Carol S! It’s so frustrating to have people assume I could cure my disease if I ate better (or had eaten differently) or if I exercised more, etc.!! Television shows and printed “news” articles only add to the public’s perception of all diabetics being alike: overweight, overeaters, and underexercisers! I find myself often telling people that I’ve taken insulin shots (pump now) for well over 50 years, I was a skinny kid when I began, and I’ll never get off it–and, no, I can’t take pills instead. I suggest leaving “diabetes” to the ever-increasing number of T2s and giving those of us with T1 a new name.

Bob

A name change would not mean much to informed diabetics and would add to the general publication confusion and misunderstanding. There are also other causes not defined in type 1 or 2 not addressed by old or proposed new names. My diabetes was the result of surgery for chronic pancreatitis which resulted in the removal of most of my pancreas.

jim snell

I agree with Bob that a name change does not do anything for me.

Diabetes is about excess glucose in the blood distribution system and its rot on the body and its pipes and oirgans.

How one gets there is another bag of worms.

Type one’s are thought of a pancreatic islet failure that immediately turns on the problem due to no insulin production. Thinking to day is targeting an autoimmune disease that causes pancreas and its islets to shut down. One immediatly needs t1 to implement tight diet , exercise and probably add insulin to arrest the mess.

Type 2 seems on the surface to be an insulin failure in its latest stages and arrives on the scene slowly and progressively.

Today as in Type 1’s ; type 2’s really need to exercise tight diet and exercise control and then need a regimene of adding insulin orally or thru liquid insulin. Type 2 for this 30 year plus type 2 is about controlling liver leak, proper eating a good mediterranean diet as well as exercising sufficiently

WHile I am out of the main stream, my suspicion is that the constantly rising blood glucose in this type 2 was due to relentless excess liver glucose release combined with poor diet control coupled with lack of exercise. In addition, the skeletal muscles temporary glucose stores can only store so much glucose and then it backs up in blood system and as a result of high blood glucose levels causes the pancreas islets to stop insulin production.

So in the end both type 1 and type 2 share insulin production failures from different issues.
Type 1 – auto-immune attacks on pancreas while Type 2 is from aging, genetic failures and islets stopping insulin production due to excessive glucose oxidation pressure.

Both diseases ability to back up excess glucose in body; leave both bodies at risk for body rot and horrible complications.

Type 1’s have to take immediate action for survival, Type 2’s think or fooled they have time to think about this as the disease creeps up on them. Fact is both types should be dealt with agressively.

What name change will offer here is not clear to me.

Scott Teel

TWO NAMES. They’re treated completely differently. They have completely different causes. They affect the body differently.

Hate having to describe the difference based on misconceptions.

Adam

I seriously could care less. Most people who don’t have Diabettes don’t have a clue anyway. I have had Diabettes since the age of 18 and am 41 now. Either way you look at it type 1 or 2 the disease is horrible. So does it really matter what you call it. 🙁

Bruce Ross

I have been a diabetic since 1962, when it was called “Juvenile Diabetes”. The only thing that I currently find frustrating is the recent focus on “Type 2” with little or no delineation between this and “Type 1”. This isn’t earth shaking because I know my condition and have good control. Also, I don’t believe enough attention is given to proper exercise techniques and healthy dieting disciplines for Type 2 diabetics.

Don M

What we need more than anything else is an understanding in the general public that diabetes is a disease, not a character failure. Imagine if we separated lung cancer into “type S” (smoking-caused) and “type U” (uncertain cause). Would it lessen the need for cancer research? Would it lessen the focus on smoking cessation?

YES, both type 1 and type 2 are made worse by poor lifestyle choices, but cause and correlation aren’t the same thing.

I am the organizer for a DFW-based group of diabetic athletes, both type 1 and type 2. I am a type 1 ultramarathoner and century cyclist. A close friend and fellow athlete in our group is both type 2 a top-performing endurance cyclist who has done multiple centuries and longer-distance cycling events.

It takes only one example to test the rule. Change starts with recognizing that not all diabetic people are overindulgent “fatties” and not all overweight people are diabetic. The sooner we start treating diabetes as a disease and not a self-inflicted curse, the better.

Laurie Kutrich

I absolutely agree with a name change. I work in acute care and type 1 diabetics are frequently mis diagnosed upon admit (assumed to be type 2) leaving them at high risk for hypo and hyperglycemia.

Different nominclature with be very helpful and possibly prevent lifre threatening complications.

chet

If you change the names to make the difference clear. Please update all diabetes. There is medical facts that are show more then 2 types of diabetes now known.

Jo Ann Hynds

I am Type 2 diabetic & have never had a problem understanding the difference between 1 & 2 so of course I don’t understand why there is a problem. Sounds like there is with many people. I can’t see why changing it to T1 & T2 would change anything. First of all you are diabetic, then you are either Type 1 or Type 2 that I have ever heard of but from the comments I guess there are other types. But I’m fine like it is. It is amusing to read some of the comments though.

Howard

To be honest I would like to have explained to me what the difference is between the two and I am supposedly a type 2 diabetic?

A.A

Yes! It’s about time they were given two different names! As a Type 1 Diabetic for 22 years, I;ve had to constantly explain to people that “my diabetes” is different than their “grandpa’s diabetes.” As a little kid, it is tough to keep telling people there are two different kinds – I would LOVE a name change.

Audrey

I am pro name changes. I have had Type 1 for 37 years and I have found I have to explain the differences between T1 and T2 ALL the time. There is so much publicity about T2 that T1 gets pushed out. When I read articles about diabetes in magazines and listen to stories on TV, I get the feeling they do not know the differences and plug T1s in with T2s without making differentiations.

Mimi

I was diagnosed with Juvenile Diabetes (IDDM) in 1982 and have seen that switching to Type 1 has had no significant affect on clarifying what kind of diabetes I am living with. A name change is not going to help the general public but possibly help the medical staff. To be honest with you, even some of the professionals are clueless about how to properly treat patients case by case.

I’ve been living with this for 31 years and have had all sorts of complications including kidney transplant in 2008. The name changes have no significant bearing on the real issues of living with and managing diabetes. I don’t feel the need to educate everyone about diabetes with the exception of those close by who may find themselves confused about a hypoglycemic episode. I am more concerned with taking back control of my body through diet, exercise, and healthy lifestyle choices. I volunteer and talk about my experience to help newly diagnosed patients see that it is not a death sentence. I do appreciate the effort because things like this were not available 20-30 years ago. Thanks!

Joan

There is a stigma attached to Type 2 diabetes; many people, including doctors, assume that people bring it on themselves due to poor diet and excercise choices. I would prefer to see it labelled “end stage insulin resistance”

Cedric

The answer is more education and for folks with T1D or T2D to be open about their condition. They need to be educators and advocates for not only learning more about treatments and living with diabetes but also be a resource for those who don’t know, are indifferent, or just ignorant about diabetes. Changing the labels will only confuse it. Heck, I was diagnosed with T1D and I’m an adult, not a juvenile. Probably a more accurate label than juvenile diabetes but just a serious for our young people.

Ellen A

I am type 2. When I was in a car accident, I told the paramedics I was “diabetic, non insulin dependent.” I felt that that gave the best info.
Diabetes has made me very skinny by the way, and I wish there were more helpful articles than “how diabetics could/should lose weight.”

Donna Wooten

I feel that distinguishing between Type I & 2 would be a great benefit. I always hesitate on telling anybody that I have Type 2 because it seems both types are lumped in together. I believe Type 2 is misunderstood by anybody that doesn’t have it.

pat

why should it matter those us who have it know the difference. Some of us are proactive and research. I agree with the the above comment..there is stagma when you tell other about your diabetes. That is why I do not tell any one outside the dr and family. If they ask me how are you losing weight? I say” I am eating in a healthier way”. Other than that its none of there business.

Donna

My Grand-daughter is type one….on a pump (diagnosed age 2). I was diagnosed with type two, but I am insulin dependent….ON A PUMP. So am I not a type two? Guess what? When I am sick…I check for ketones. When I eat…I bolus.
The world is a mess….I am not worried about the name diabetes takes. I just hope there is a cure for all.

Jan

YES, we should change the names of the 2 different types! I have Type ! diabetes and NO ONE I know can differentiate the types, or bother to ask EVEN doctors and other health care types, whom have put me in danger, assuming that getting my insulin shot can be delayed until they are ready to do it, on their time schedule, not my glucose levels!! I have encountered problems at several levels, because people think as long as you’re not eating a cookie, you have NO other issues. All think I have diabetes because I was “bad” and should just stop eating, it’s a nightmare for the most part! This name issue is a huge problem, more than anything else, to the public…

Willis Johnson

I tell folks that I am an insulin dependent diabetic, Type 1. That means my body no longer produces insulin.

Karen Hull

Just name changing will not change the confusion, since fully half the young physicians do not understand and are fearful of the disease itself. Then one would take on the task of trying to raise the education ability of John and Jane Q. Public thereafter on top of the medical community. It would not improve the situation any.

jim snell

Joan makes a good suggestion. This dam disease is most annoying and I agree due to the fact that
diet and exercise end up being key components of resolving the mess; the immediate unfortunate conclusion is you did it to yourself.

That is not true, unfortunate and a result of a lack of tools and science dealing with how the body operates as a complex system and its method of operating with liquid energy – glucose and how that is managed, stored, utilized by the hunter gatherer gene digestion system.

Thank you for excellent thoughts and ideas. This 30 year type 2 diabetic thanks you.

Pat Weiser

I was surprised to read about something called LADA. ON further reading, I am convinced that is what I have. I would like to see the condition name changed as the disease progresses, for the medical community if nothing else. I am supposedly a Type II but completely insulin dependent now. That means because of my diagnoses I am not entitled to any of the advancements made for Type I even though that is now essentially what I am. I don’t believe in change for change sake, but am in favor of change for reasons of clarity.

Joe Teixeira

Even I don’t fully understand the differences between the two. I’ve been a diabetic since 1993, and my numbers are all over the spectrum. I exercise {jog and bicycle} and also work part time with my old running buddy. My glucose numbers range from 26 to over 300. But I’m still in pretty good health.

E Frain

Regarding changing the names of TypeI and Type 2 Diabetes; I feel it is a bad decision. When I was first diagnosed as diabetic the types of diabetes were called Juvenile (Insulin dependent) and Adult onset (still made some insulin, but had to watch their diet and possibly take a pill to aid in their control.)
Unfortunately,in this day,we cannot refer to diabetes in in these ways because Juveniles ie, children are being diagnosed with diabetes, however their bodies still make insulin so they would be considered, as explained above, adult onset diabetics.
The labels Type1 and Type2 I feel makes the diagnosis of diabetes less confusing because those labels of Juvenile, making one think only a child can be diagnosed with this; and Adult onset,making one think that this only occurs in adults; were more constricting for the diagnosis to be understood, and therefore more confusing for the patient and their families.
I have been a Type1 diabetic for the past 40 years. I am 52, and I am a Juvenile,or Type1 diabetic. I check my blood sugar 4 times a day and take insulin injections 4 times a day according to my blood sugar test result.
Do not change the labels from Type 1 and Type 2.
I feel diabetics can explain their disease using these labels.

Robert Heglund

I can see no good reason for even considering a name change. This seems to be a reaction to the modern thinking that new names are needed for most everything. Will a name change assist in finding a permanent cure? I doubt it. If people with diabetes spent as much time managing their diabetes than on a name change it would be a large step forward. By the way, I am a type 1 diabetic. Will my condition change if a “new” name is invented?

Pat Weiser

Jim Snell….insulin cannot be used orally.

Karen

Oh my heavens…YES – there is a medical need to differentiate between Type 1 and Type 2 diabetes. I have thought about this for many years. I have 5 children, 3 of which have Type 1 diabetes. I, myself, have Type 1 diabetes as well.

There is absolutely NO comparison between these two diseases. Having lived with another person who has Type 2 diabetes, we may as well be on opposite sides of the planet. He eats anything he wants, as much as he wants – at any given time. So much fir his Type 2 diabetes. In the meantime, we Type 1’s have “hell” to pay if we behave thoughtlessly even fir one minute. There is no reprieve. You’re a Type 1 24/7.

I’d recommend renaming the Type 2 version of this disease. I have not yet thought of a substitute name.

joan

As a Type 1 for almost 56 years I have never had any problem knowing what type of diabetes I have nor has anyone else been confused. Mostly because I took the time to learn and thenexplain from the get-go!

Changing names will not help those who, for many reasons, choose not to learn and to listen! Almost any article or book describes the differences between the several types of diabetes!

Those of us in the family of diabetes should always try to help others to better understand. When we do we help ourselves even more!

Knowledge is Power!

Ann Egan

After 55 years of dealing with diabetes, it seems to me that the days when the terms “juvenile” and “adult-onset” were used presented the clearest distinction of the two. It has become more and more unclear that there is a difference.
Despite there being some overlap in symptoms and presentation, there remain significant differences. In my opinion, clarification of the names would be very useful.

Kris

I believe a name change would be very helpful. I’ve been a Type 1 (originally called Juvenile) for the last 40 years. As more and more people were diagnosed with Type 2, I found myself explaining to more and more lay people why I couldn’t just get by with a better diet and some exercise.
Worse than that, however, lately I’ve found actual medical personnel in walk-in clinics that don’t seem to know the difference!! No, they aren’t endocrinologists but I would expect that a basic medical education would explain the difference. Apparently it doesn’t and/or they don’t remember which is which. In either case, something needs to be done to help both lay and professional people keep them straight!!

Bob

Use the energy (and other resources) to educate the public, those with the disease and those without it. What is at the base of this current trend to rename everything? If people aren’t taking the time to learn about this disease then giving it a new name will not improve the situation. All that will happen is the addition of the question; “Oh, is that the same thing as Type II diabetes?” A unnecessary name change did no good for “The Artist Formerly called Prince”–it won’t open peoples eyes about diabetes either.

Louis LeBlanc

I am a type 1 diabetic and yes I have had to explain
the difference to friends and people I meet who see me check my glucose level and inject insulin. I don’t think however that changing the names would help this. The new media in general do not differentiate between the two and tend to describe both as a disease broth on by weight gain and lack of exercise. This needs to be corrected somehow.

Art Nation

Why do they need new names when they are already ALSO known as “juvenile-onset” & “adult-onset? Aren’t THOSE names descriptive enough?!

W.condi

When I was diagnosed with type 2 diabetes, I had to get used to differentiate between #1-#2 ….however it din’t take me long to understand it,…quite simply w/ #2 the pancreas does not make enough insulin to eliminate the surplus glucose or sugar from the system therefore having to take oral medicine like Metformin,etc, to compensate. where as with type one the pancreas has stopped the production of Insulin altogether and it must be replaced with Insulin Injections or other,…and it is more complex and harder to control. I sympathize with those who find it harder to understand it, but they will eventually,….and YES I do think it would be better to add a more descriptive name to type one like……Insulin dependent or type two…….Low or insufficient Insulin.

Thank You,
W. Condi

Di A. Beet Tees

YES, two distinct names will save lives as the dietary recommendations and treatments for type I versus type 2 are different. Further, the medical community is confused by treatments based on the study of one that is applied to two, and vice versa.

John Conrod

Type 1 Diabetes mellitus would be better named Insulin-dependent DM since the Islets of Langerhans of the pancreas produce no or insufficient insulin. Insulin-dependent DM is clearly an auto-immune metabolic disorder with multiple genetic components. It may start episodically as the body’s T-cells slowly destroy the insulin-producing pancreatic cells and the condition becomes chronic.

I was diagnosed with acute-onset Juvenile Diabetes in 1970 with a 13 day hospitalization for severe dehydration and critical Diabetic Ketoacidosis. With the first injection of U-40 Regular beef-port insulin and U-40 NPH beef-pork insulin, I felt I had been reborn. I knew “I” was OK, but my body was very unwell.

I decided immediately that I am NOT a “Diabetic”, rather that “I have Diabetes”. I control it, it does not control me.

As blood glucose testing advanced from Clinitest Urinalysis to Clinitest Test Strips to early Blood Glucose Meters my control continued to improve. My insulin response improved as we progressed to U-80 insulins (still R & NPH), and improved further with the introduction of rDNA Human Insulin.

Comfort level increased with the change from glass syringes and needles that had to be sharpened and re-sterilized to disposable needles of increasingly finer gauge.

Local injection site problems such as tenderness and fatty tissue atrophy disappeared with Human insulin. However, I did develop subcutaneous scarring from decades of multiple daily injections, despite careful injection site rotation.

My personal control improved dramatically when Medicare and Medicare Advantage finally approved an Insulin Pump. The pump allows much finer fractional unit infusions of quick acting insulin, as well as more accurate dosage based upon actual carbohydrate intake and tracking of remaining active insulin and a continuous adjustable background basal rate infusion to control between meal and overnight blood glucose levels.

Diabetes of any “Type” is manageable through careful dietary control, exercise, frequent bg testing, medications or insulin injection or infusion, and consultation with medical and healthcare support teams.

“Type 2” whether brought on from diet, obesity or other lifestyle factors, is also a metabolic condition.

All types of Diabetes mellitus can benefit from clarification along with greatly increased public education and awareness to enable faster and greater early detection and intervention along with familial and societal awareness. Food nutrition labeling is an important component and could be increased with more nutritional informative information for retail food outlets such as restaurants and fast food establishments.

I personally encourage more emphasis of self-management and self-awareness, empowering better control. As I mentioned at the outset, we (individuals, families, caregivers and the healthcare community) can control Diabetes of any type. These chronic conditions do not control us.

Lisa Fown

I am a mother of two twin girls that both got type 1 when one was 13 months old and the other twin was 15 months old they are 23 years old now. I have been saying for 22 years the names need to and must be changed there is too much confusion. There are too many commercials that advertise food for type 2 too loose weight and they very rarely say just for type 2 so the majority of the population when they hear Diabetes just know about type 2. So in a lot of peoples mind if you have diabetes all have do is eat right and exercise and the diabetes will go away. I don’t know how many times I have heard well they can get rid of the diabetes or grow out of it because they are misinformed. I took one of my daughters to the ER when they were toddlers and the “nurse” checking us in ask “she will grow out of it right?” there is a very BIG difference in the two diseases. Everyone that ask me I always tell them that they are two separate diseases and Type 1 is much more sever. My daughters could die in the middle of the night, my daughters have had thousands of pokes during their life. they have too watch when they are sick, if they exercise too much, if they have too much stress, if they eat something and get the carb count wrong etc everything can effect their blood sugars. Most people have no idea what a type 1 diabetic goes thorough in a day. I always have been an advocate for my girls one of my daughters is in college away from home so i found a way to get her a diabetic dog to be with her at all time. I obtained information on sensors that help let you know when your blood sugars are going up and down and they both have sensors along with their pumps now. I also called Columbus Ohio when i read an article about the islet cell study they were doing and talk to one of the head people to see if my girls would qualify to get the islet cells that was supposed to get rid of the diabetes. what i found out that only people who have had transplants such as a kidney transplants were eligible because you had to be on the medications for transplant patients so body would not reject the cells and the cost was around $1,000 a month and insurance was not covering it. so as you see i worry about my daughters everyday and would do anything to help make their lives easier. I had a conversation just last week with my daughter that we need get the name “diabetes” changed also we were trying to figure out the best way to do it. to find out someone else is already doing it is just amazing! This name has to be changed because it will show that they are different diseases and Type 1 doesn’t have anything to do with amount you eat or dieting. i am willing to help in any way to help get this done. what my girls go through on a daily basis. I have found my daughters too many times with a low blood sugar were they are convulsing and i have had to give them a glucagon shot and they have been in the hospital more times then I can count especially when they were toddlers. A name change would give people with Type 1 diabetes such a sense of satisfaction to know people would know what disease they have and stop confusing their disease and saying just start eating right and you will get rid of your disease some people assume that someone with Type 1 brought their disease on them selves which can not be further from the truth!!!

Edna Carter

what difference does a name make? Type 1 or 2
each person has different needs.

Kathy

I don’t see the need for a change. There are over 57 variants of diabetes and I think we just need to be able to answer what type of diabetes we have. Just because a person uses insulin doesn’t meand the person has type 1. And if a person is type 1.5 that person’s doctor may not have that person on insulin yet because that person being an adult may be diagnosed with type 2 firs.
I have neuropathy and there are 150 types of neuropathy are we going to have a separate name for all 150 types of neuropathy. I don’t think so. I don’t say what type of diabetes I have unless someone asks and the only time the type is important is when I am seeing my doctor or am in the ER or Hospital. Other than that it really doesn’t matter

J. C.

Yes, absolutely change the names. I have long understood that they are two different diseases–they are caused by two different conditions and function in different ways.

Many years ago I went to the University of Miami Diabetes center, I think it was called the Diabetes Research Institute, for care for my Type 2 diabetes. I received adequate care, and tons of requests for financial contributions to fund their research into a “cure” for diabetes. I called and wrote asking them if the “cure” (islet cell implants)they were researching would help Type 2 diabetics as well as Type 1. I never got an answer even though I asked orally and then in writing several times. Of course, the answer is NO. It helps only type 1.

Something like 90% of “diabetics” are Type 2. Yet little research efforts were going to Type 2 research. I felt that the fundraising was somewhat fraudulent. It was written to give the impression it would help all diabetics, but that wasn’t true, and they weren’t forthcoming when asked directly.

Both my parents, two of my grandparents, my only sibling, and several cousins have been type 2–more than 10 people in my immediate family. No one in my family was type 1. Although I know MANY type 2 diabetics, I know only one type 1, a classmate of my son. I think that ratio is truly representative of the incidence of type 1 versus type 2.

Everyone deserves help and to have their medical condition researched, but because of the differences, the conditions need separate research, and separate fundraising for research for each type, and that can happen only if the different diseases are clear.

Certainly type 1 deserve research and improvements in their disease management, and it has received the bulk of the attention, but likewise the high percentage of type 2s deserve an awareness of the prevalence and frequent devastating consequences of their disease–and appropriate fundraising and research efforts. Type 2 is not an evil and to-be-ignored step-sister of type 1. Type 2 is not Cinderella.

I also agree with the other comments regarding the fact that type 2 is, in many people like me, a genetically caused disease, and is not a result of poor behavior or lack of will power.

Many factors contribute to the incidence of type 2, and our society needs to step up and demand from our food producers and from our government, that more healthy foods are produced and made commonly and predominently available AND that such unhealthy foods are not the predominent foods available in our supermarkets.

This applies to high sodium content of all prepared foods, and even canned and frozen vegetables. Even the few “reduced sodium” versions of foods that are available are way too high in sodium. Our food producers are harming our health and driving up our health costs and misery.

I hope I live long enough to be able to buy a frozen meal that is not going to harm me medically. Right now it is almost impossible. Even the supposed “healthy” frozen foods are way too sodium laden and otherwise unhealthy.

Dianne Geissal

If “juvenile onset” (or type 1) is about absolute insulin deficiency and “adult onset” (or type 2) is about insulin resistance at first then relative insulin deficiency developing later, then I don’t see why there’s a problem with the terms type 1 and type 2. In fact, I think type 1 & type 2 are adequate terms because of the new trend of obese “juveniles” and young adults developing type 2. It’s all about the status of pancreatic function regardless of the patient’s age. You’re either type 1 or you are type 2 – which is very clear to me. Am I missing something??

After reading all of the debacle regarding the online petition that advocates for changing the names of type 1 and type 2 diabetes, I had to put in my input. See, I’m not a T1, or a T2, nor did I get diabetes because I was pregnant. I am the forgotten. The unknown. The WTF are you talking about? SAY WHAT?!? I am an “Other”.

As Wikipedia states it:
OTHER TYPES
There are several rare causes of diabetes mellitus that do not fit into type 1, type 2, or gestational diabetes; attempts to classify them remain controversial. Some cases of diabetes are caused by the body’s tissue receptors not responding to insulin (even when insulin levels are normal, which is what separates it from type 2 diabetes); this form is very uncommon. Genetic mutations (autosomal or mitochondrial) can lead to defects in beta cell function. Abnormal insulin action may also have been genetically determined in some cases. Any disease that causes extensive damage to the pancreas may lead to diabetes (for example, chronic pancreatitis and cystic fibrosis). Diseases associated with excessive secretion of insulin-antagonistic hormones can cause diabetes (which is typically resolved once the hormone excess is removed). Many drugs impair insulin secretion and some toxins damage pancreatic beta cells. The ICD-10 (1992) diagnostic entity, malnutrition-related diabetes mellitus (MRDM or MMDM, ICD-10 code E12), was deprecated by the World Health Organization when the current taxonomy was introduced in 1999.[3]

What I find interesting about all of this talk is that no matter whether the names of Type 1 and Type 2 change or stay the same. I will still be an “Other”. The few of us that have this type of diabetes are very few and far between. I have yet to meet another “Other” personally. I have “met” a couple of them through the DOC (chat rooms/message boards) but not in real life. If you were lucky enough to meet me at a DOC meetup, you probably met the only “Other” you’ll ever meet. Funny how this type of diabetes always has quotation marks associated with it. Like a Roger Maris asterisk.

Although we are a type of diabetes recognized by the World Health Organization and most endocrinologists know of it. How educated is the public? Should I start my own petition so that I am recognized and people know exactly how I got my diabetes? I guess I would call it the DCPPTGAPID Diabetes (For “Damn C-Peptide Producing Pancreas That Gets Acute Pancreatitis and is Insulin Dependent” Diabetes.)

Why aren’t the names Type 1 and Type 2 good enough? Maybe diabetics should educate their relatives and friends about the two types. Being a diabetic, I know the difference between the two types but maybe other people who don’t know the differences need to be educated about the two types.

Connie

I am a type 1 diabetic and have been for 56 years. I really don’t think there needs to be a name change now. When I was diagnosed, we were known as juvenile diabetics. Now children are being diagnosed with type 2.
It’s true that most people do not know the difference between the types and assume that all diabetes is caused by overeating starches and sweets. As diabetics, I feel it is our job to help educate them when we get the chance.

Jill Petersen

I believe Dr. Mark Hyman hit the nail on the head with “Diabesity”. Type 2 is almost always the result of being overweight, bad diet, sedentary lifestyle.

Dee Fones

My opinion is to find a new name! Maybe at the same time some marketing guru could help with advertising to change misconceptions and educate people.

BOBBY CHILDRESS

Age 78 TYPE2 diabetic since CY2000. In my opinion we dont need new name. There is no confusion what type diabetes if person is really interested in the disease/condition. He/she should be able to tell their relatives/friends the difference. I personally am not concerned if non/diabetics dont know the difference. It is these people that are probably walking around with diabetes and dont care if they have diabetes or not. Same people without any health insurance. In todays world, if a person needs to know about diabetes and the two types go on social networks or Google it. My A1C is 6.9 and I dont cheat on my diet, if I do my body tells me. My goal does not include the numbers the medical community sets for me the same as a 30 year old. I respect the education of do/dont in diabetes education and my goal is to feel good and hope I see the sunshine the next morning.

Jay

Keep the TI and T2 designations. Keep educating people the differences until they understand. They never forget the definition of #1 or #2 when they go to a bathroom.

Toni

I am a Type 2 insulin dependent diabetic. I think if a diabetic doesn’t understand the difference between Type 1 and Type 2, then he or she is responsible for educating him or herself. Information about it is not hard to find. As for other people, I don’t believe changing the names will make any difference…..if they don’t understand it now, they won’t understand it then. Some folks just have a mental block about trying to understand medical things. My concern is more for a diabetic who doesn’t understand the difference…..ask your Dr. who has prescribed your medication!

Lorraine Lovrek

tease dieresis already have other names,
T1=childhood ; T2= adult calling them T1 and T2 is only an abstention; and only blurs the picture.

Louis Oliverio

Leave it as it is. Just learn and remember it. More confusion would occur if changed than what is now.

jon T. Wilkins

I have had Type 1 for 40 years. Mostly I find that a name change would help when writing articles about diabetes. many times one starts reading but learns they are talking about type 2. It would be helpful to know which one as there are many differences in the kinds of diabetes.

Joe

A lot of folks seem more worried about what other people think than how it affects their own disease management. These kind of comments almost always come from those affected by type 1, or their loved ones. They seem to be extremely concerned someone might confuse their disease with the “other” diabetes, or that type 2 might be taking away attention from their affliction. There is also the slightest indication that they consider type 2 to be less “honorable” than type 1. For their sake I would be fine with renaming both diseases.

Larry

The two conditions have similar symptoms but they are not the same at all. They should have different names. Medical science has allowed us to learn the difference.
Having a cold and having hay fever have similar symptoms but they have different names. Type 1 and Type 2 names should be updated.

Donna B

Confusion, confusion. I had to have a C Peptide test to see if I was a Type 1 or Type 2, in order to qualify for an insulin pump. My endocrinologist qualified me as a Type 1 insulin dependent diabetic. Then I moved and changed doctors.

I told my new endocrinologist I was a Type 1 and he asked “how long have you had diabetes”? I said 22 years, but I developed it as an adult. I was not a child or teenager.

“Aha”, he said. “You could not be a Type 1 for that is a juvenile diabetic. I say you are a Type 2.” I told him then howcome oral medications don’t work? Howcome only insulin injections work and my C Peptide designated that my pancreas is not working?

“Okay. So you are a 1-1/2!” ???? It may be splitting hairs, but I say it should be changed.

James

Trying to change the name of Type 2 diabetes mellitus to another name assumes the T 2 has a single cause. It is not that simple as Diabetes Self management has an article which says:

“So it appears that what we call ‘Type 2’ is really several different diseases. One is mostly caused by the liver overproducing glucose; another by insulin resistance in the muscles. Still others seem to result from damage to the pancreas or the signaling systems the body uses to direct insulin. Of course, more than one of those is usually going on.” source ~ http://www.diabetesselfmanagement.com/Blog/David-Spero/healing-leaky-livers/

So it would seem that a name change for type 2 diabetes to something like the suggested “Insulin Resistance Diabetes (IRD)” would really miss the mark on the functional naming of the disease. Or it would break the type down into myriad little subtypes.

I would expect much the same with type 1s as well, since they do not come by the disease by the same mechanism.

It is IMHO a waste of time and effort. I believe that it would also be a source of confusion among medical people.

Chris

Change it! Think about the reason we don’t have cancer type 1 through type 1000. They’ll all kill ya, but they are all different.

M.E. Bon

I support the notion that Diabetes #2 should have a more appropriate name and that Diabetes #1 should keep the name. My logic, #2 is more a metabolic condition with numerous root causes and ramifications. I also support the idea that MDs become educated in the complexity of #2 if they take patients with the condition. It is very disheartening to go to a physician who globalizes all diabetics (mostly on the negative side), out of laziness assumes treatment based on ignorance thus complicating for a patient their conditions. I have read numerous books, opinions and documents related to diabetes in order to take control of my condition to improve my health, thus I have become a challenge patient to at least 6 MDs and their clinic systems who have insisted in treating me out of the text book Diabetes #2 with NO success. Yet when I embarked on a health improvement program investigated and documented by Diane Kress, RD, CDE, which addresses metabolic disorder and nutrition I have improved my condition to the point that with correct nutritional information and added physical activity I am becoming drug free with 1 year of lab results to document my success. Diabetes #2 is not Diabetes in the same context of Diabetes #1, it should not be called Diabetes, it should have its own correct name and it should be treated with ALL the resources available addressing all its nuances striving for patient success and not “MD status quo diagnosication methods”.

Ferne

NO! NO! NO! Changing the name isn’t going to change the disease. It will still be the same but if the name is changed it will be confusing.
For the child who is upset because he is going to have it for life, changing the name isn’t going to take away the disease. If the name changes I’d be willing to bet people are still going to call it like it is now. It’s like Resless Legs Syndrome. Now it’s called by another name which won’t mean anything to those who’ve heard it called by the syndrome all these years.

This inaccuracy keeps us from getting the interest and funding needed for a cure by being mixed up with a metabolic disorder.

H. Whitling

Coming from a long line of diabetes relatives, the type is really not as important as a life-style change is needed in each case. May grandmother never took shots, my father did, My uncle had pills. I have shots…….The main goal is to keep that sugar level at the proper reading as much as you can and not let it got high for very long after eating. Just know that type 1 or type to or Hypoglicemia are very important to treat. Take it seriously. I don’t care which type I have as long as I can keep it low enough to get a good A1c reading every 3 or 4 months. I guess I support a rose by anyother name would still be the same if you are just changing the name. The disease is still the same.

Earby Chatham

If it’s not broke why do we seem to need to tinker with something that many of us live with each day. I don’t think it’s in the name change that’s needed but it’s in the explanation of what Type 1 is versues Type 2. There probably needs to be a better way to explain the differences, like could there be a way to simplify a complicated disease.

It’s just two women trying to get into the limelight. No sympathy for their “cause” at all!!!

Joanne Bassett

I agree the names need to be changed.

I’m overweight and diabetic. The overweight I will take responsiblity for, but the diabetes is genetic, on both sides of the family tree. My Dad was not overweight and he was diabetic. My brother isn’t overweight and he is diabetic. I’d like people to realize that being overweight is not always the cause of diabetes; it doesn’t hel, but it’s not always the cause. If different names for Type 1 & Type 2 diabetes can help people understand it, then by all means, change the names!

David Bolt

Good Morning folks. I was diagnosedin 1960, at the age of 3 as a DIABETIC. My Pancreas had turned itself off.%Therewas no type 1 type 2 designation and the Doctors I had did what they new was good for a diabetic.I recently had a nurse ask me if I had the bad kind of diabetes and it might just be that Ihave.My Endocrinologist has me injecting6 times every day.Good Luck with this petition, It islong overdue

Name changes for old outdated diabetes and diabetic words are desperately needed to eliminate the confusion and misleading that transpires when those words are used without clarifiers, which often happens.

From reviewing the 91 comments made prior to today (October 23, 2017), it appears that about 45 of the 91 posters might be open to the name changes I created in 2010. I suggest that folks visit that web article to understand the comprehensive nature of the name changes, which total (the diabetes name changes and the reactive hypoglycemia name changes) close to 100 new specific types of glucose anomalies (6 applying to the mostly non-glucose anomaly Insipidus).

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